SHE WAS BORN IN 2006, AND WE KNEW SHE WAS GOING TO BE BORN WITH MANY MEDICAL PROBLEMS. A PATIENT AT BOSTON CHILDREN'S HOSPITAL, WHERE DOCTORS RECOGNIZED SHE HAD MANY ABNORMALITIES OF THE AUTONOMIC NERVOUS SYSTEM, WHICH TROLLS MANY FUNCTIONS THAT THE BODY AND BRAIN PROVIDE AUTOMATICALLY, LIKE BREATHING, DIGESTION, AND MORE. SHE SPENT THE MOST YEAR OF HER LIFE MOSTLY IN THE HOSPITAL. SHE SEEMED TO BE GETTING BETTER AROUND AGE TO AND THEN STARTED TO DEVELOP SYMPTOMS AND PROBLEMS. DOCTORS SUSPECTED SHE MIGHT HAVE MITOCHONDRIAL DISEASE. A MUSCLE BIOPSY PROVED THE DIAGNOSIS. ULTIMATELY, HE DIED OF THE MANY COMPLICATIONS OF MITO, A DISEASE FOR WHICH THERE IS STILL NO CURE. AT THE TIME OF HER DEATH, HER YOUNGER BROTHER GABRIEL WAS BEGINNING TO SHOW SIGNS OF POSSIBLE MITO ALSO. HE STOPPED TALKING COMPLETELY. HE HAD A VERY SERIOUS DEVELOPMENT. HE WAS NOT TALKING OR MAKING EYE CONTACT OR INTERACTING. HE WOULD NOT RESPOND TO US ANYMORE. IT WAS VERY, VERY CLEAR THAT SOMETHING VERY SERIOUS HAD HAPPENED TO HIM NEUROLOGICALLY. GABRIEL WAS SOON DIAGNOSED WITH AUTISM. HIS PARENTS WERE SHOCKED TO LEARN THAT MITOCHONDRIAL DISEASE , HIS SISTER'S AILMENT, HAD BEEN SHOWN IN SOME CASES TO BE AN UNDERLYING FACTOR IN AUTISM. THEY WORRIED THAT GABRIEL MIGHT SUFFER EVEN MORE SERIOUS HEALTH PROBLEMS IN THE FUTURE. SINCE MITO IS, AFTER ALL, A PROGRESSIVE DISEASE THAT CAN AFFECT MANY PARTS OF THE BODY. MAYBE A MILD FORM OF MITOCHONDRIAL DISEASE? WE KEPT HEARING TOLD NO, NO, NO, RIGHT AWAY. RIGHT FROM THE START, THERE WAS ONE DOCTOR WHO WAS CONVINCED THAT WE WERE NOT MAKING THIS UP. UNFORTUNATELY, MAKING A CHRONIC AND COMPLEX DIAGNOSIS LIKE MITOCHONDRIAL DISEASE, THE PARENTS ARE PLACED IN A DIFFERENT POSITION OF HAVING TO BE A GATEKEEPER OF ALL OF THE INFORMATION AND A MEDIATOR BETWEEN MULTIPLE SPECIALISTS. FINDING THE MIT O GROUP, ALSO A MOTHER WHO HAS A CHILD WITH MITOCHONDRIAL DISEASE . PARENTS AND THAT GETTING INTO TROUBLE BECAUSE THEY CARRY AROUND TOO MUCH MEDICAL INFORMATION, OR THEY ARE PERCEIVED AS MAKING THE MEDICAL DECISIONS ON THEIR OWN, WHEN, IN FACT, IN MOST CASES, THEY ARE JUST TRYING TO MAKE SENSE OF WHAT DOCTORS HAVE TOLD THEM. THE HEAD OF THE CHILD PROTECTION TEAM AT CHILDREN'S HOSPITAL FILED TWO COMPLAINTS AGAINST JESSICA AND HER HUSBAND ON BEHALF OF GABRIEL. ONE WAS FILED JUST MONTHS BEFORE THEIR DAUGHTER DIED, AND ONE SOON AFTER. THE IMPLICATION WAS I WAS CREATING ALL OF HIS MEDICAL PROBLEMS, THERE WAS NOTHING WRONG WITH HIM, AND IF WE WERE TO TAKE AWAY ALL OF HIS MEDICAL ISSUES, HE WOULD BE A COMPLETELY NORMAL LITTLE BOY. YET, GABRIEL WAS SUFFERING FROM A NUMBER OF PROBLEMS DIAGNOSED BY DOCTORS AT CHILDREN'S HOSPITAL, INCLUDING AN INABILITY TO MOVE FOOD THROUGH HIS SYSTEM AND EXTRACT NUTRIENTS, RESPIRATORY AND SKELETAL MUSCLE WEAKNESS, GROSS MOTOR SKILL PROBLEMS, AND IMMUNE DEFICIENCIES. THEY DID A VERY THOROUGH INVESTIGATION AND CLOSED THE CASE, BUT AT THAT POINT, UNDER THE ADVISEMENT OF MY SONS OTHER SPECIALISTS AND OUR OWN PERSONAL FAMILY BELIEVED, TO MOVE THE CARE OUT OF THERE. THERE WERE SOME WONDERFUL PHYSICIANS THAT WE LOST HIM UP BUT IT WAS NOT GOING TO BE A CONDUCIVE PLACE FOR GABRIEL TO GET MEDICAL CARE. AND GABRIEL WAS ULTIMATELY GIVEN A DIAGNOSIS OF MITOCHONDRIAL DISEASE, AND HE IS NOW A PATIENT OF DR. MARK KORSON .